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Re: [Families of Angelman Syndrome] I feel sad

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  • Monica Yalan Chang
    I went to pick up her after lunch, she looks happy and play with other kids who they don t want to go to the trip. then when I went home with her and open her
    Message 1 of 10 , May 26, 2005
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      I went to pick up her after lunch, she looks happy and play with other kids who they don't want to go to the trip. then when I went home with her and open her lunch box, I just found out she didn't eat anything! not even drink her apple juice and candy! and whold afternoon she was very moody, making mass at home. she must had a bad day! I can not change the situation in the school, I am sorry my little angel.

      Jennifer Posey <jposey83@...> wrote:Piopio9 You shouldnt feel sad your child sounds very advanced the only thing she cant do is talk. My son is also 3 years old He can not walk, talk, stand alone, any normal things that a 3 year old should do. You should be thankful that your child is (normal) just b/c you got a diagnosis doesn't mean anything if your child is already at that high of a development level. Angelman's syndrome is not the end of the world, just a small curve remember that and I hope you have a better days thinking of that.

      Jennifer, Christopher, Brianna

      piopio9
      wrote:
      My angel is 3.2 years old, we live in Denmark, we just found out
      she has angelman syndrome 2 weeks ago, before, we didn't think she
      has any problem, only she is late for speak,people just told us that
      because we use 3 languages at home that cost her late! here
      doesn't have that many angel syndrome kids, I think only 55
      people. Yes, I feel sad for her, crying is not helping, so I stop
      crying anymore, but today I cry again, the pre school is going to
      have half day trip today, my little angel was invited to joing them,
      but today they told me that they can not take her, because the
      teacher who should look after her is sick, so she can not go, she
      has to stay at school. I understood their situation, they have
      another 10 children to look after which are normal kids, they don't
      have enought teacher just look after my little angel, but I just
      feel so sad for her, of course she doesn't understand why she can
      not go, but I can not help her to change their mind. My little
      angel can walk nicely, she can eat by herself, she plays well with
      other kids, and other kids love her as well, she understand
      everything when people talk to her, she just can not speak, only
      papa and mom, she knows red, green, yellow colors, also she knows
      *O* *U* these 2 letters, she helps me after we have dinner, to put
      the dishes away, she loves drewing. People feel sorry for her, and
      they think we should send her to the special school not in the
      normal pre school, because sometime she do pushes other kids when
      she needs attation, that make other parents not very happy, but I
      think she learn more with the normal kids. Sometim I just feel
      hopeless here, I don't want to tell family member about our problem,
      because this just make them feel sad, thanks for this group that I
      can talk about it.




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      Monica Yalan Chang

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    • Monica Yalan Chang
      thanks for your advise, but I don t think that we have this kind of person here. It is very different here. I dont blam the teacher who is sick. I just worry
      Message 2 of 10 , May 26, 2005
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        thanks for your advise, but I don't think that we have this kind of person here. It is very different here. I dont blam the teacher who is sick. I just worry in the future how many thing will happen to her, and she couldn't tell me. How I going to find out what she is thinking. My doctor told me that she will not think too much, but it looks like she does have feeling.

        Justannae Kirby <justannae@...> wrote:Hey Piopio....got an idea..time to hire an
        "escort"..talk to family members, neighbors, folks at
        church, girls scouts/boy scouts or even contact your
        local university (for a student studying some type of
        child development course). It will take a few weeks,
        but work with the chosen one to know your child, and
        your child to know them. Make sure the escort knows
        well in advance when there will be outings. Play it
        up to your child that he/she is a kind of royalty, and
        royalty always has someone looking out for them.
        I don't know about teachers in Denmark, but, here in
        the States, teachers almost worship adults who help
        out with field trips....give it a try.....



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        Monica Yalan Chang

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      • Justannae Kirby
        You need a different doctor. That is probably the most blatantly ignorant remark i ve ever heard a professional make. Don t you believe for a minute that
        Message 3 of 10 , May 26, 2005
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          You need a different doctor. That is probably the
          most blatantly ignorant remark i've ever heard a
          professional make. Don't you believe for a minute
          that your daughter has a big NOTHING between her ears.
          Even when it looks like she is staring off into La-La
          Land, her visual-memory is at work. They watch how
          things "work". They memorize the enviroment around
          them, that's why they have certain areas (their home,
          their bedroom, grandma's kitchen, even a particular
          class at school) that they calm down and seem pretty
          ordinary. They have summed up the area and know
          everything around them and that it's SAFE, and not too
          busy.
          Not all angels are mentally-retarded. Some are, well,
          uninformed. Also, some angels take a little "pause",
          before they respond. With a little nudging they come
          through with an answer or response. Work it.
          Monica:
          1) The younger your angel is, the tougher everything
          is, and some of it's pretty overwhelming. It gets
          easier.
          2) Doctors and all may be professionals, but you are
          the EXPERT. You know your little girl better than
          anybody else.
          3) You know what you want for her, you'll figure out
          as you go along as to what she needs. Then go for it,
          even if you have to step-on-people's-toes to get it.
          You are her best advocate.
          4) Right now, somewhere in the world an angel is being
          born. Their mom doesn't even know it, yet. She
          thinks it's just 'a boy', or 'a girl'. Makes you feel
          kind of...EXPERIENCED....doesn't it?





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        • justannae kirby
          You know, another thing you could do is, keep track of where the class goes on field trips. Ask the teacher what kinds of things the kids would be experiencing
          Message 4 of 10 , May 26, 2005
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            You know, another thing you could do is, keep track of where the class
            goes on field trips. Ask the teacher what kinds of things the kids
            would be experiencing on the trip. Then, on a day off school- YOU
            take her on a "field trip", brown bag lunch and all.
          • Monica Yalan Chang
            thanks all of you, I feel much more better now. Here in Denmark, they don t want parent be in the school more then 15 mins. only on the child birthday, you can
            Message 5 of 10 , May 26, 2005
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              thanks all of you, I feel much more better now.
              Here in Denmark, they don't want parent be in the school more then 15 mins. only on the child birthday, you can stay more then an hour, they want children be independ, which I agree, that is why, they keep puching my daughter to the special need school, I told them she will go there but not now. My husband and I are going to take her and one of her friend to this place that she missed out tomorrow, it's looks like going to be a good weather tomorrow!
              Re. the doctor here, I agree she has no idea about angelmen syndrome, everytime when I ask her about why my angel doesn't do that or this, she couldn't answer me. but I can not change doctor here, you can change it if you have private insurance. My husband is going to ask around if there is any other way.
              Again, thank you all, I am ok now.

              Monica + Natasha (3.2 years old)

              justannae kirby <justannae@...> wrote:
              You know, another thing you could do is, keep track of where the class
              goes on field trips. Ask the teacher what kinds of things the kids
              would be experiencing on the trip. Then, on a day off school- YOU
              take her on a "field trip", brown bag lunch and all.






              Yahoo! Groups Links








              Monica Yalan Chang

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            • justannae kirby
              well, you re not alone when it comes to limited resources. Junior sees a public health clinic doctor, and she doesn t go much beyond just keeping him healthy.
              Message 6 of 10 , May 26, 2005
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                well, you're not alone when it comes to limited resources. Junior
                sees a public health clinic doctor, and she doesn't go much beyond
                just keeping him healthy. I had to explain to her what Angelman is.
                You're best bet is to educate yourself...there's all kinds of
                information, here in group, and on the internet. A whole lot, if not
                most, of what your angel learns, she's going to learn at home. We
                should all be issued teaching certificates!!!!
              • Monica Yalan Chang
                you are right, we should have a teaching certificates! before we know Natasa has angelman syndrome, we tought her everything that normal kid should know how
                Message 7 of 10 , May 27, 2005
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                  you are right, we should have a teaching certificates! before we know Natasa has angelman syndrome, we tought her everything that normal kid should know how to do it, some she can do, some she still can not do it, like she still can not jump, blow, suck, can not sit down for more then 15 mins, still have problem to tell me when she needs to use toliet......, the other day I ask the doctor that I can not see Natasha is so different then other kid beside she can not speak, the doctor said Natasha will never learn how to help you arranged dinner table or help you clean up the table, which 3 years old kid can do that, so I went home start to teach her to help me, 2 weeks now, she help me to move some dishes to the kitchen, and even put some in the dish washing machine! of course not in a nice way. What I want to say it here is, these doctors or pro they have no idea about angelman syndrome, they just sit there and telling me, she will always be like this, and the improvement is limited.

                  justannae kirby <justannae@...> wrote:well, you're not alone when it comes to limited resources. Junior
                  sees a public health clinic doctor, and she doesn't go much beyond
                  just keeping him healthy. I had to explain to her what Angelman is.
                  You're best bet is to educate yourself...there's all kinds of
                  information, here in group, and on the internet. A whole lot, if not
                  most, of what your angel learns, she's going to learn at home. We
                  should all be issued teaching certificates!!!!






                  Yahoo! Groups Links









                  Monica Yalan Chang

                  [Non-text portions of this message have been removed]
                • pam danko
                  When i found out that Riley had angelman syndrome the geneticist told me that she was mentally retarded but we wouldnt know to what degree until she was grown
                  Message 8 of 10 , May 28, 2005
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                    When i found out that Riley had angelman syndrome the geneticist told me that she was mentally retarded but we wouldnt know to what degree until she was grown so we should continue to treat her as we had treated our other children and she is doing quite well some things she doesnt understand i know but actually i am glad she doesnt because the things are when someone is afraid of her so on and so forth Riley is starting to take her first steps she climbs like a little monkey and when i am sad she always makes me laugh I believe most children with this syndrome are capable of almost everything that other children are capable of they just find a different way to achieve it I also believe these children are just a little bit closer to god and that is why they dont understand the bad things in this world they are innocents persay unfortunately some people are so uneducated that they shun these children and treat them differently personally i believe that it is our job to educate these
                    people as much as we can so that in the future children born with disabilities have an easier go of it and even more oppurtunities than ours have had that is obviously how some parents in the past also saw it or we would have sent our children to an institution at the first findings of any type of mental problems like they did years ago Riley will be 4 on June 7th and although sometimes things are challenging i would say i wouldnt have it any other way than how things are I am lucky though we have good insurance have come in contact with some great doctors and Riley attends an excellent school called Lighted way here in Illinois I know we still have many obstacles to face in the future and I hope I am strong enough to hurdle them all because god knows Riley sure is. I know that sometimes you just cant help but to be sad especially when it comes to the ignorance of the rest of the world but continue to educate yourself and pass the knowledge on to others and then it seems like
                    instead of sad usually you just get a little frustrated lol Pam mother of [mollie 14,samantha 10,annemarie 8,and riley 4]


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